Endometriosis - any advice?

[bobinks]

Hi - I've just been diagnosed with endometriosis after having a small ovarian cyst removed. I've recovered from my op ok but am getting constant back/pelvic pain, mostly low level intensity but enough for me to have trouble sleeping and feel a bit rubbish and grumpy. I'm seeing my GP on Monday as the hospital have discharged me (without any useful advice). Can anyone give advice on how to get help/support or share their experiences of managing the condition - I understand its not 'curable' as such. Thank you

I have had endometriosis for 30 years having been diagnosed in my late teens. I had treatment twice (laparoscopy and laser) and had two children in my late twenties. I was fine during my thirties but it came back with avengence when I was 40 and I had a big op with lots of rummaging, laser treatment and then 6 months of Zoladex (drug-induced menopause). I also had the Mirena coil fitted and that is what I have attributed to keeping the symptoms at bay. I am on my second one now and just starting the menopause. My lovely gynae told me two weeks ago that this shoud be it now and I am so relieved.

I would recommend trying the Mirena. It doesn't suit everyone but it produces a constant low level of progesterone in the perfect area for it to prevent endo forming. It has to be worth a try.

I take Bernadette without any breaks and have been symtom free for 4years

Oops that should say cerazette

[http://www.endometriosis-uk.org]] is a useful website to read. Knowledge is power!.

Did they tell you about the cyst; was it a "chocolate cyst"?.

I would certainly inform the GP (and PALS) that you were discharged without any useful advice. Did they talk to you about the operation's findings?. If not such poor service post op is also unacceptable.

Thanks all for you comments.

Atilla my cyst was a 'functional cyst' which had shown up previously on a scan while the endometriosis was diagnosed by the removal of 2 smaller endometriomas on the ovary (these are chocolate cysts, yes?) found during the op. I had a letter to say the cyst was benign but it didn't mention the endometriomas (I only read this on my hospital discharge sheet after the op and wasn't sure it actually meant I had endometriosis).

The doctor at the outpatient check up seemed to assume I knew I had endometriosis. To be fair he did talk me through what they did/found and recommended painkillers to manage the pain, but I guess I was surprised by hearing the diagnosis and probably didn't ask the right questions at the time.

I'll ask my GP about some options for managing the condition with pill/hormones. I'm not that keen to keep just shoveling the painkillers in!

Also, I've not yet had a period since the op - is this typical and any ideas why (if I'm not menstruating and endometriomas have been removed) I am still getting pelvic pain?

You are correct; the endometrioma are also known as chocolate cysts.

Certainly go to the GP and in the meantime I would suggest that you keep a daily pain and symptom diary. If you do get referred back to the gynaecology dept this will also give them clues.

I would certainly raise the issue of the pelvic pain with your GP, the cause of that needs to be properly determined.